Perhaps the confusion about survival time and symptoms come from your use of the term DLB (Dementia with Lewy Bodies)? Since your mother had PD for years before dementia and hallucination symptoms, the correct term is PDD (Parkinson's Disease Dementia), not DLB. DLB and PDD are included under the umbrella "Lewy Body Dementia." These terms are so confusing.

Has your mother been seen by a GI doctor? She should be evaluated for gastroparesis.

Robin

Wed Jun 13, 2012 1:52 pm

labeckett

Joined: Thu Apr 21, 2011 9:07 pmPosts: 248

Re: Advice - I need concise info for ALF on DLB

The lists of resources are so helpful for all of us!

My mother is not in SNF yet - she and my dad just moved to assisted living - but she had a stay there earlier this year after pneumonia. It made me extremely grateful for our excellent primary care doc (PCP), the other specialists, and the fact that our health care system has a very well-functioning electronic medical record (EMR). Also, that I have good relationships with everyone on the team. Our plan for my mom, because she has multiple specialists, is that everything, including all prescriptions, gets coordinated through the PCP. I sometimes serve as the conduit, but we use the EMR system to make sure everyone knows everything that is going on - all test results, doctors' notes, etc are recorded there, as well as the meds. I also maintain a chart of her meds, with the date of last update, and I give my parents printouts (for each of them), color-coded in blocks by time of day, to match the color of the little boxes on the pill box. I guess technically i could get access to the EMR, but I think it's a little shaky ethically so I do not do this. However, there is a mini-version that is accessible to patients and their designated surrogates with HIPAA clearance, and we use this for communications.

The PCP's office is just a few blocks from their home, and he visited each parent regularly when they were in SNF, and communicated also with the SNF attending (though I don't think the SNF has direct access to the EMR, nor does the closest emergency room, which is just a block away - that's where they go for most hospital care unless it requires the specialists in Sacramento at our big tertiary care center.)

I know we are lucky to have such a good set-up, and to have first-rate specialists on good terms with the PCP and with me. But I've also worked pretty hard at making their lives easier, as well as the the nurses and other folks in the AL and SNF. The resources here are very helpful in that regard. And so is all the advice! And the personal accounts - I feel much better prepared for what is to come, at least clear-eyed and realistic that it could get pretty tough.

Laurel, you could not obtain access to the EMR due to HIPAA regulations but you can always ask for [and, if you have medical POA, obtain] a print out of your mother's records.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Wed Jun 13, 2012 3:06 pm

labeckett

Joined: Thu Apr 21, 2011 9:07 pmPosts: 248

Re: Advice - I need concise info for ALF on DLB

Well, I'm on the medical school faculty, and I have signed HIPAA clearance for both parents, so i probably could in fact get access to the full EMR. I've seen much of it anyway, as most of the docs give me some sort of printed or electronic summary. And we use the de-identified data on dementia patients in the clinic for research, and I suppose I could find her dementia clinic results there if I worked at it. But, as you say, the simplest thing would be to ask, if I ever wanted any more detail than I already have. The main reason I don't ask for full record is that it may very well include discussion of family members and support, and I would prefer that my colleagues feel free to write anything they find helpful with the assurance that I won't be reading that part. I trust their judgment to keep me fully informed in all ways that would help my care for my parents.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Wed Jun 13, 2012 3:18 pm

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Advice - I need concise info for ALF on DLB

Julianne, I had to go back through my posts for this one. Oh! I see what you mean. Ignorance about DLB is a common condition and can be cured. Lack of common sense is less open to treatment!

I don't mind when nurses and doctors don't know much about our friend Lewy. But it drives me crazy if they attempt to make pronouncements and treatment orders without bothering to learn even the basics.

Sorry for the confusion!

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Wed Jun 13, 2012 3:22 pm

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Advice - I need concise info for ALF on DLB

Laurel, you are ao very very lucky to have such a good set-up, and to have first-rate specialists on good terms with the PCP and with you. And, of course you work very hard at the caregiving role, too. I don't mean that you're sliding by on luck. Far from it.

But I have seen other caregivers work very very hard at staying informed about their loved ones' medications and treatment plans, and giving input on those subjects. As soon as the loved one is in a care center of some kind, the hardworking, loving caregivers are butting their heads against a brick wall. They run into head nurses like the one Liz is dealing with, who think they know better than the specialists and are sure the patient doesn't have lbd even though they barely know how to spell lbd. NSF staff who won't give a PRN medication because they don't believe the off-label use it is being put to. ALF staff who insist the patient is faking it because the symptoms fluctuate and whose attitude is punitive. Staff doctors who order haldol in spite of allegery statements. Argh!

It is so encouraging to read of placements that are working out well. And I would like to think there is something we can do -- like placing a statement in the file requiring all med changes to be cleared by the PCP. Because I am frankly terrified at the thought of placement.

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Wed Jun 13, 2012 3:50 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Advice - I need concise info for ALF on DLB

I think most facilities are eager to work with residents' families as well as their providers but it sometimes does take some initial 'butting of heads'. Vigilance is the key. I'm there every day. It's not necessary, of course, but it does help. It also helps to show appreciation for the staff. Maybe it's because I'm an RN that I understand the kind of stress and workload they are dealing with but I treat them as colleagues, not adversaries.

Asking early on and as often as necessary for a care conference is a good idea, too.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Wed Jun 13, 2012 3:59 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Advice - I need concise info for ALF on DLB

Jeanne - don't let the horror stories some of us have had scare you. That may sound counter-intuitive, but I think Pat just gave you some valid advice. No place is going to be as perfect as you want it to be. No one will care for your LO exactly like you do. But, if the time comes that placement is necessary, I'm sure you'll do your best to find the best match for his care and your expectations. And, no matter how good the match, you do need to be vigilant.The problems I had in trying to care for my dad seemed to be more like regional/cultural issues. For the most part, our issues were not with the ALF, but with his medical people and the local culture. He lived in a rural area where there is no neurologist, not even a gerontologist for 90 or more miles. For the most part, doctors there are still gods, are infallible and family members are treated like we have no brains. (that's not all the doctors there, but it was my experience with several of them in 2 different towns) There was no PCP who would see patients living in the ALF, we had 1 choice only for primary care and that was a CNP. I tried to establish a good rapport with her and with my dad's psychiatrist (that's as fancy as medical specialties get where he was). At first things seemed to be pretty good, but then I found out that meds were prescribed by the psych. without my knowledge. They made my dad "better" cognitively, but what happened was his delusional thinking was less but his ability to understand just what a dreadful state of health he was in increased. So, these great meds that had some benefits (he was more aware of what month it was, or when dinner was, and that it wasn't snowing in July, etc.) BUT his depression got even worse and his anxiety increased immensely. I hated to see him in such an aggitated and depressed state, so I tried to get him off the meds.That was the battle that I lost, and at a big personal expense. When the psych. refused to take him off the meds, despite the ALF director thinking that was best, and despite the MD director of hospice thinking it was in his best interest, and despite my being the POA, I fired the psych. This made the CNP very angry so she put my dad back on the meds even though my sister and I had met with her and discussed in some detail why we wanted him off certain meds. Family members there are NOT treated like part of a care team at all. We were treated like idiots and were threatened with a lawsuit. I contacted my dad's atty and he said we should file a suit against both the CNP and the psych. for not following my dad's AD and for their not following the POA rights and responsbilities. I had no fight left in me at that point and my own health had become very compromised. I could not take on a lawsuit and take care of my dad, his house, his finances and my own home and family responsibilties 500 mi. away. My only other choice was to move him near me and by this time he was not deemed in any shape to be moved anywhere, by the head nurse and the hospice nurse.So, if you do need a facility at some point, you get a good one, you have good medical professionals who treat you as part of the care team, and you are vigilant, you are likely to have a more positive experience. Most people, thank goodness, do not have such horrible experiences. So, try not to worry, and with all the things you learn about on here that help you avoid the mistakes and situations we've had, you should do fine if that time ever comes. Have a good evening, Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Wed Jun 13, 2012 4:46 pm

aelisabeth

Joined: Tue Aug 30, 2011 1:42 pmPosts: 108

Re: Advice - I need concise info for ALF on DLB

Jeanne - My mother also has some borderline issues that alienate her from the care givers. It is absolutely true that the folks working at assisted living are overworked and underpaid. I really do get that. The turn over indicates that as well. You may very well have a better situation if and when the time comes. I also have to say that being in the midwest and not being in a major city is also an issue for us. I have met several folks who run nursing homes who understand Lewy Body related dementia, but I have not met folks working in Assisted Living who have. My mother can be someone who needs a nursing home one hour and someone who is ready to lead a book group two hours later. This cycling makes the people at the ALF think that she is faking her disease. This is a frustrating thing for us since we have had her in our homes and we have been with her enough to know that she is not faking any disease. I do not believe that everyone who has this disease encounters the same problems that we have faced. The folks who talk about being pro-active are right, though.

Liz

Wed Jun 13, 2012 7:52 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Advice - I need concise info for ALF on DLB

Liz - what I suggested once when my dad first moved to the ALF and the head nurse then would tell his CNP & psych. that my dad was "fine". She'd see him for a few min. maybe once a day on average, and he was able to do showtime at that time. I suggested that she sit in his room with him for 4 - 8 hours a day sometime like I did and she'd see that he (1) wasn't faking the bad symptoms and behaviors and (2) he could only hold it together to do showtime for a very short period of time. Somehow that finally resonated with her and I think she did spend more time with him at least a few times so she knew what I was talking about. I don't know about the nursing staff, but the poor CGs who work in these facilities have very hard jobs, jobs that not too many people would want and the are grossly underpaid because they are mostly "unskilled labor." So, it leaves the residents there at their mercy, and the turnover is not good for someone with dementia either. I tried to explain my dad's disease (what I was learning about it at the time myself) and being very, very good to his aids. They deserved the best, especially when he'd been particularly aggressive and hard to deal with. They were very kind people for the most part who have a very difficult job. I hope through educating your LOs CGs they will become better informed and able to care for her in the way you'd like them to. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Wed Jun 13, 2012 8:51 pm

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Advice - I need concise info for ALF on DLB

Lynn, I'd like to chalk your story up to regional/cultural issues. But the horror stories in my local group are from metropolitan Twin Cities, Minnesota, home of Medtronics and Mayo Clinic, and generally pretty sophisticated medically. We are not NY or LA, but we are not Podunk Hollar, either.

I'm not expecting perfection. And I certainly don't expect my caregiving days to be over if/when Coy is placed. I'm prepared to take on the new role of advocate (I think). I am truly grateful for every caregiver who has fought the battles before me, and perhaps made the path a little easier.

But I'm still scared!

Thanks for your encouragement.

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Thu Jun 14, 2012 2:19 am

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Advice - I need concise info for ALF on DLB

Jeanne, you might look at Eden Alternative facilities. http://www.edenalt.org/. They are not perfect but, IMHO, significantly better where it really counts.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Thu Jun 14, 2012 10:51 am

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Advice - I need concise info for ALF on DLB

OK, well I guess I can't blame it on Podunk Hollar completely then! Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

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